My tumor is so huge, tongue, right jaw, up into my ear canal. I decided against such a major disfiguring and incapacitating surgery with such little chance of cure. I'm at University of Michigan right now, 12 hours post op Laparoscopic J tube placement...I can only open my mouth less than a half inch and only swallow liquids now. I hope to start palliative chemo soon to shrink my tumor. The oncologist here at U/M suggested a clinical trial, but that would entail a 2 hour drive each way, and I dont want to impose on my friends like that, and my father is unable to make that kind of trip weekly.
I know that nobody said life was fair, but this sucks the big Wally. I feel so bad for my father, losing his wife and youngest daughter in less than a year...and now he'll have to watch his only other child suffer a painful and lingering end fairly soon. Yup, the big Wally.
is there no a hope lodge somewhere near the clinical trial? Hugs
I don't know what to say but I couldn't read what you wrote and say nothing. I'm sorry that life has been so unbearably hard for you and your family this year. I hope the chemo starts soon and gives you some relief.
Have you met with the hospital social worker? They might be able to help set up lodging or transportation so that you can participate in the trial. If you have a friend who might be able to drive you, please ask. I know it sucks to feel like you're imposing but this is a crisis and you need help.
Also, if you aren't already talking with someone, a referral to your hospital's psycho-oncology department might be a good idea. I've recently begun seeing a therapist at my hospital and it has helped me a lot. It sounds like you could really use some support.
Anyway, maybe the last thing you need is my well-meaning advice. You know what's best for you and what you can handle. I just wanted to say that I'm thinking of you and wishing you and your father the best.
xoxoxooxoxxoxoxo Kellijojo.
Kellijojo, I'm so sorry to hear your news. It certainly sucks big time. I agree with Tracy, now is definitely the time to ask friends for help. No one would begrudge helping at such a time of crisis. I wish you love and peace as you decide on your course of action. Tammy.
Kellijojo - I am so sorry to hear your news. Please do not be afraid to ask your friends for help whether or not you decide on the clinical trial: it is a blessing to be able to give help to a friend or relation in need.
My thoughts and prayers are also with you whatever you decide.
Maria
PICC line in today, start carbo/taxo/erbitux tomorrow. Anyone have any idea when my hair will start falling out? I hate, hate, hate being hooked up all nite to the tube feeding...and then spending so much time during the day giving myself water. No time for myself at all. I have 2 friends who have been indispensable, driving me to Ann Arbor, and all my appointments here. Dad hasn't really been any help at all, sadly. He's barely able to function because of his IBD and depression. As they were putting in the PICC today, I laid there thinking ,"Why am I doing this?!? Why???"
Why?
You mean hair falling out like breast cancer hair falling out? Don't think that will happen with your cocktail of chemos.
Hi Kellijojo, I am pleased that your friends have come through for you. You deserve their help and friendship and love. Good on you for not just rolling over. I hope the chemo does its job and improves your symptoms. Did you get into a trial?
I cant answer your questions re the hair loss but I'm sure someone will be able to. There are just so many questions we all ask that there are just no answers for. Take it one day at a time. Tammy
Hi Kellijojo
I assume the "taxo" part of your chemo is Taxotere? this is the one that will cause your hair to fall out. Alex shaved his head as soon as the hair loss started as it didn't start falling out "gracefully". It tended to let go in clumps so he had a series of bald spots. I do not remember exactly when it started but my sense was that it was around the second dose??? I remember a girlfriend of mine telling me that the doctor was amazed she still had hers at 6 weeks. Unfortunately, it fell out after that and like Alex, she ended up shaving it.
so sorry you are going through this again but so glad your friends have stepped up. Sometimes we are so preoccupied with "being a burden" that we don't realise that an opportunity for a true friend to help actually the opposite of imposing on them as it gives them a chance to be active in your treatment.
Kevin's hair started falling out shortly after his first round of cistplatin, taxo and 5FU. Can't remember how soon, but it was pretty quick.
So sorry you are having to do this. Just sucks.
Kathy
The American Cancer Society will help with providing wigs for cancer patients who lose their hair. They will help you all you need to do is give them a call. They are available 24/7. Your doc will need to fill out a form.
PS.... Please add a signature. It greatly helps everyone keep track of your history and help answering your questions. Click on the "My Stuff" tab and on the drop down menu, select "Edit Profile". Scroll to the bottom and type in the white box, click "submit".
So glad you are doing treatment - you are doing this for your dad, for yourself, and the fact that you have friends helping you should tell you the one thing you need to know... people love you and care!!!! remember this. Hugs to you. I agree... taxol, is the one that will cause you to lose your hair, but as quickly as it falls out, it will grow back. My poor friend who has peritoneal cancer (manageable, not curable) has had her chemo changed 3 times, each time she loses her hair, but then within a month or 2 she has sprouts coming back in and its curly hair. It's interesting with radiation my hair all along the back of my neck fell out, and grew back in - I had about an inch and a half of growth within 3 mos after treatment, but the funny thing is it came back in black and curly, where before it was gray!!! and wavy to straight. I went today to get my roots touched up and the hairdresser said it's weird your hair here all up the back is black.. but the rest is gray! so rads comes back in full color, but the loss from chemo it comes back in a normal color ( gray if you're gray...) , my friend's has come in gray every time. anyway my point... it will come back quickly... push for the clinical trial (erbitux? is that the trial?) you will get through this. Hugs.
My friends are absolutely the best! I love them SO much. I can't believe the people who have crawled out of the wooodwork to help. One of the surgeons that I worked with brought over his trailer on the day of his 50th birthday bash (200 guests, band, bar, catered food...the whole 9 yards) so I can start sorting and donating stuff. Other people I worked with have been doing yard work and taking care of my garden...often they come over before I'm even awake, to work before the heat of the day...I don't even know who all is doing these things.?.who to thank. People bring small casseroles over for my dad's dinner. It amazes me how kind and caring everyone is being.
My father wants to keep my cats when I'm gone, but I just set up a backup plan, for when he goes (he's 82.) Sue was my sister's Very best friend growing up...she was devastated when she learned of Lori's suicide. She's a cat lover since childhood and has experience with feline renal failure. She offered to take them, if for some reason Dad can no longer manage it. She lives in Denver, but her parents are still in town, so she wouldnt really have to make a special trip. I've set aside money in my will for their care. I feel like a great weight has been lifted off my shoulders. Dad is going Monday to put the exact same thing in his will...whew! Getting care for my kitties was a huge worry for me.
I'd really like to move back into my own house for a little while. I had my kitchen remodeled, but I haven't gotten to enjoy it yet. Soon I won't feel good enough and I'll have to move back in with dad for good...but I'd really like to use the new appliances ( especially the dishwasher!) I don't think my dad wants me to go, but I need to for me. Wish me luck, I'll probably start fighting that battle in the next week or so.
Gues I'm done rambling. Time for bed. Goodnight friends.
It sounds to me like you've already given up, I know reality looms but there is always the potential for the treatments to work. I'm not talking through my hat either, I was just saying to charm, there is a woman on a Facebook page I belong to who has had 5 recurrences and radiation with each one and she is cancer free now, my friend Jeanna's husband was sent home to die..he's NED now. Christine has had three battles and is now cancer free. Im not saying do anything extraordinary but do get treatment, do a trial if you can. You're so young. I am glad you've made plans for your kitties so your mind is at ease, and definitely hope you get home to enjoy being on your own. You deserve that and more. hugs we're here to walk through this with you.
Hi Kellijojo, the cocktail of Chemo that you are getting is one of the potent anti-cancer combination. If it works for you then the tumor will certainly be in control and can be operated upon. You'll start losing hair within a week. What I additionally suggest is that before you go for next round, do get a PET/CT/MRI scan done against the old one to see if it worked.
Don't lose hope so soon, sometimes believing that you will be cured helps.
Note: Palliative Chemo does not mean that there is no cure, the intent here is to reduce the tumor size prior to curative treatment.
I wiiLl certainly talk with Dr. Danso about a repeat CT, and when he feels is a good time to do one. They started me on a low dose doxycycline to hopefully get a step ahead of the Erbitux acne rash, before it starts. I just want to shrink the tumor in my tongue/throat so I can continue to talk, and maybe resume some chewing and swallowing. I bought a baby toothbrush ( it fits!) and have gone to town brushing my teeth. It was so disheartening not to be able to brush, except with those foam lollipop things. The little things make such a big difference!
Hugs!!!! Please consider the trial... Your friends have proven they will help. And yeah on the toothbrush! Every little thing helps!
Thanks cheryl, but honestly, I'd rather go with something tried and true and, of course, closer to home. I've never really been much of a risk taker, and this feels like a more comfortable fit for me.
Hi Kellijojo,
Just wondering how you are doing? Hope things are going well. God Bless!
Hugs - do what you can to feel comfortable.
I was hoping the trial would be offered in conjunction with standard treatment.
kellijo
You have not posted in a month now. Did you know that if you type into Google the search term "sucks the big wally" that your OCF post comes up # 2 out of 16 million, 900 thousand hits.
That's second out of 16,900,000 results. Thought it might bring a smile to your face. I have refrained from commenting on your post in the hope that you decide to do more than palliative once the chemo shrinks the tumor. If you met some of the "disfigured" oral cancer survivors I have , then you would know that they have crafted a meaningful worthwhile life. You can too. Even three time "losers" (cynical sarcastic way of third recurrence)like myself can be winners as long as we don't give up.
Keep the Faith
Charm.
Kellijo - There's a LOT of hope in Charm's post above and it gave me hope for you, too! Please, please don't give up. Stay with us.
Kellijo, I am here if you feel you want to talk with someone. Ive been thru a major life changing surgery to take care of my third round of OC. I am not thrilled to be now disfigured but I have a good life with many good friends. I have my ups and downs like anyone else but overall I lead a very happy life. I have had my jaw removed during a 10 hour surgery and had some complications that not everyone has. I understand everyone is different and know you have been thru so much already but you are young which does make a big difference. I didnt have much hope at all going into the third round, in fact I had given up before I even decided to get treated. But I thought long and hard about my situation and the members of this forum along with Brian Hill helped me realize that I could do it. Somehow I got thru it and Im still here over 3 years later. If you would like to talk with me over the phone I can call you or you could give me a call. I really think it would be very helpful to speak with me. This site is a very valuable place for support and info so please come back often and let us help you.
(((HUGS)))